: )...Here is his story.
When our son was born, we got the shock of our lives. Right away, I knew something was wrong. His profile looked strange to me. The nurse cleaned him off and wrapped him up and handed him to me. He started making strange noises and choking. The nurse took him and ran out of the room with him. A few minutes later, we heard a bunch of calls over the PA system.. ENT to the special care nursery STAT.... Respiratory Therapy to the special care nursery STAT.... Anesthesia to the special care nursery STAT..... We knew this was all for Hunter.
It was the worst day of my life. By the time a doctor came in to talk to us we were a mess. The doctor told us that he was born with a rare birth defect called Pierre Robin Sequence. We had no idea what that was. He said his jaw hadn't formed and he didn't have an airway. He would need to be transferred down to Minneapolis Children's Hospital. He would need surgeries, and would be in the hospital for at least a month. We were devastated. To make matters worse, the doctor had a very thick accent and we weren't able to understand him. We had to get on the phone with Nick's mom and have her google Pierre Robin Sequence from her home computer and tell us what it was. We learned that Pierre Robin is a birth defect that affects 1 in 30,000 live births. It is when the jaw bone doesn't grow and this forces the tongue into the roof of the mouth during pregnancy. So, the babies come out with very small chins and cleft palates. Hunter was on the severe side, as he had no airway.
Unfortunately, Hunter was born on a Saturday of a holiday weekend. So, the specialists were all out until the following Tuesday. We had to wait 4 days to speak with the doctor who would perform the surgeries. When we finally met his surgeon, we were so elated. We knew from the moment we met him, that he was an amazing doctor. We had no fears. We knew Hunter would be OK. Dr. Sidman explained everything to us. He had pioneered the surgery that Hunter needed. He had patients flown in from all over the US. Hunter needed Mandibular Distraction. He would go in and cut Hunter's jaw bone on both sides and insert pins on either side of the cut. Each day for several weeks, he would crank the pins farther apart. This would grow Hunter's jaw bone. After his jaw was large enough, a stabilizing bar would be placed between the pins to hold the bones in place while they healed. After about 8 weeks, the distractors would be removed in another surgery.
Hunter came through surgery great and remained sedated for the next 2.5 weeks or so. Each day, the doctor would crank in the morning, and my husband would crank in the afternoon. After the distraction was done, and the stabilizing bars were in place, Hunter was weaned off the medication. We were finally able to see his little eyes! Now, he had to learn how to eat from a bottle made for babies with cleft palates. While he sucked, we would squeeze the bottle at the same time to help him. After he was able to eat and gain weight, he was discharged. He was about 4 weeks old.
The first month at home was not an easy one. I was so scared he would grab onto the bars and dislodge them. We wrapped him so tight at night! He always wore socks on his hands. He wasn't able to turn his head very far and tummy time was not possible. It was such a relief when those darn distractors came off! At about 8 weeks old, Hunter had the distractors removed, and at the same time, a pre-cancerous mole removed. His next surgery was ear tubes at 4 months old. Babies with cleft palates are prone to ear infections, so this was done as a precaution.
Hunter's last surgery was his palate repair at 10 months. This was definitely the worst surgery. He was so much older and more aware. To prepare for the surgery, he had to be completely weaned off of bottles. He had to drink from sippy cups exclusively. This was next to impossible!! His recovery from his surgery was tough. He was in lots of pain, and because it was oral surgery, he had to wear casts on his arms so he wouldn't be able to reach into this mouth or shove anything into his mouth. Not fun!!
Aside from extra doctor visits, and a rough first year of life, you would never know Hunter ever had any of these problems. We did however, get another surprise when he was about 15 months old. We found out that Hunter had a genetic disorder called Stickler's Syndrome. We had gone to a genetic counselor and had some blood drawn. Pierre Robin Sequence is sometimes a part of other syndromes, so we did all of the testing. And, it came back positive for Stickler's. Stickler's Syndrome is a progressive genetic condition that affects the eyes, ears and joints. Basically, Hunter is missing the connective tissues in his eyes, ears and joints. In extreme cases, it can cause blindness, deafness and premature arthritis. So far, Hunter is un-affected by his Stickler's. He gets his eyes checked once a year, and his hearing checked every 6 months. His eyes haven't changed at all since his first visit to the eye doctor, and his hearing is perfect. We are very optimistic that he has a mild case of Stickler's.
This is a picture of Hunter right after his first surgery: Mandibular Distraction.
This is Hunter after his breathing tube was removed. Just his feeding tube remains.
Here is a picture of the first time we were allowed to hold him. He was 2 weeks old.
This is Hunter in the NICU. He was almost ready to come home.
This picture was taken in the days before he was released. We used this photo for his birth announcements.
This is Hunter at about 7 months old.
Here is Hunter with his casts on, just after his cleft repair at 10 months.Hunter is about 4 in this picture.
And, here is Hunter now... age 5 1/2